Sunday, October 11, 2015

I haven’t blogged in months.
I’m sorry. I started one a while
back but now it’s obsolete. I’m not even
sure where to start now.

I’m improved so much since one year ago. Here’s a short list of some side symptoms I’ve
had to deal with over the past year:

Weight – 84lbs (I tried not to have many pictures taken
then. I don’t want to be reminded how
awful that looked)

On oxygen 24/7

Pleural fluid around lungs prevented them from expanding
much. Breathing and talking were such an
effort. They would tire me out. (Thanks to those who were my temporary voice!)

Pain. Sometimes
excruciating. In bones, tissues,
etc. Pain meds were trial and
error. Some wouldn’t touch the pain and
some made me have nightmarish dreams or see a naked family of four under my
hospital bed (no joke). I was afraid to
sleep some nights so I would try to stay awake.
I hated how pain meds made me feel.
Isolated, oppressed, depressed, and nauseous. I felt trapped inside myself. I wasn’t me.

My physical body was so weak that I was in a wheelchair for
a short while when I got out of the hospital in April.

I needed help with self-care activities.

I was unable to lay down for eight months or so due to the
fluid around my lungs. When I tried, I either
couldn’t breathe or would cough constantly from my lungs trying to expand.

My heart rate was increased.
A side effect of the pleural fluid.
A normal heart rate is around 60-100 beats per minute. Mine was over 100 and once it got up to 150
while I was sitting still. That’s not a
good feeling. Currently, I’m happy if I
see my heart rate under 95. That’s still
a work in progress.

There were a few months that anxiety had a grip on me. I’ve never dealt with that before. It was horrible! I couldn’t go into a bathroom without panicking. My heart would race and I’d start
sweating. I’d call out for someone to
come help me by bringing me ice or something to fan me and I’d just want
someone there with me. Normally, I like
to be outside doing things, but I couldn’t bring myself to go outside. It was a scary thought. I eventually ventured out onto the porch,
then the yard. It was all I could do to
sit at the table for a meal. (Sorry for
being so weird about it when I was at your house, Pam.) I felt like everything was too close to me. I would push my plate and other stuff on the
table away from me or I’d keep moving stuff around. When I started going out in public I had to
work myself up to it. At first, I’d only
go to church. I’d have to allow myself
lots of extra time to get ready. That
way I wouldn’t have to rush and get more anxious. I had to plan out what I would wear and take
with me and when I needed to leave so I wouldn’t have to think about it that
day. I had to see it on paper to prepare
myself mentally. Then I’d have to take
an anxiety medication to deal with it all.
A person coming up to hug me or encourage me was very overwhelming…and
these are people I consider close like family, not strangers.

I’m so thankful that’s in the past and that
the people around me loved me enough to help me through the fear, isolation,
weirdness, bossiness, attitude and ugliness of it all. I was not myself. I knew it but I wasn’t able to get past it
until I decided I no longer wanted to be a slave to it. (Cue the song “No Longer Slaves”!) https://youtu.be/f8TkUMJtK5k

Thankfully, the picture is quite different
now. My recent tests show “dramatic
improvement”. My oncologist’s
words. My lung has expanded greatly. Breathing is much easier. I still get out of breath at times but it
continues to improve. I’m still draining
fluid periodically from around my lung (I have a Pleurx catheter surgically
inserted between my lung and pleura).
The amount of fluid is lessening as my lung continues to expand. Originally, the doctor’s weren’t sure if my
lung would re-inflate much after bearing the weight of the fluid. All my doctors are pleased with my weight gain. I’m close to what I was before my diagnosis. My PEC team (oncologist, naturopath and
nutritionist) still guides me at each follow up visit. My immune system and overall health is
bolstered with high quality supplements like COQ10, fish oil, curcumin, turkey
tail (mushroom), etc. There is still a
healing wound on the right side of my chest.
I still see my wound care nurse at each visit too. I finished chemotherapy finally so the picc
line in my left arm has been removed.
What a relief! It had to be kept
super clean and flushed each day with saline.
Neuropathy I had been having in my fingers is gone. I no longer need home health, which I’m glad
for but I miss seeing my nurse, Florence.
A few weeks ago my oncologist ordered new, current biopsies for genomic
testing. This reveals DNA and other
information to help the doctor treat the patient more efficiently. After chemo I began a hormone therapy to
suppress estrogen and my doctor wanted to confirm we were using the best
treatment. I’m also getting my hair
back! Yay! I return to CTCA (Cancer
Treatment Center of America) frequently for testing and follow ups with my
doctors. It’s such a great place to be when having to deal with the stresses of
cancer.

Thanks again for your support, prayers, encouragement and
mostly for your love. You inspire me to
try to love as much as I am loved! I
feel like the richest person. All the
money in the world can’t buy this. To
those from CTCA reading this: I cannot
fully express my gratefulness to you for helping me, encouraging me, hugging
me, asking if I’m okay, smiling at me, praying with me, recognizing me (after I
lost my hair),bringing my lunch up to Infusion while I was having chemo, joking with me, cleaning my salad off the
floor, getting me mac and cheese that was only for inpatients when my tooth was
hurting too much to eat hard foods, coming to play guitar in my hospital room
to relax me, introducing me to your children, telling me about your family,
being a listening ear and treating me like your own family (Dr. McKnight, Dr.
Spevack, Ms. Erin, Lakeitha, Dee, Alethia, Dr. Bechara, Dr. Parks, Kim, Carol,
Lorrie, Ms. Claire, Jeannie, Alexis, Beverly, Kathy, everyone in the kitchen,
Dr. Bernstein, Dr. Steingraber, Dr. Kelley, Dr. Schofield, Joey, Commie, Lyn,
the bingo ladies, Ms. Beth and Ms. Stephanie, Alanna, Ms. Ashley, Tondra, Mr.
Chip, Mark, my respiratory therapist, the woman in EVS who made us a home
cooked meal, LizAnn..).

There is a tradition at CTCA when a patient finishes chemo
or radiation. It’s called the ringing of
the bell. After four and a half months
of aggressive chemo infusions, I walked out of the Infusion clinic and rang the
bell that hangs on the wall loud and proud!
All the staff, my husband and my son clapped and cheered with me. They gave me a t-shirt. They took my picture. I couldn’t see too well for the tears in my
eyes but I was smiling big. I will leave
you with the story of “Two Horses” that hangs on the wall with the bell.

“There were two horses in a field. From a distance,
each horse looks like any other horse. But if you get a closer look you
will notice something quite interesting… One of the horses is blind.
His owner has chosen not to have him put down, but has made him a safe
and comfortable barn to live in. This alone is pretty amazing. But
if you stand nearby and listen, you will hear the sound of a bell. It is coming
from a smaller horse in the field. Attached to the horse’s halter is a
small, copper-colored bell. It lets the blind friend know where the other horse
is, so he can follow. As you stand and watch these two friends you’ll see
that the horse with the bell is always checking on the blind horse, and that
the blind horse will listen for the bell and then slowly walk to where the
other horse is, trusting he will not be led astray. When the horse with
the bell returns to the shelter of the barn each evening, he will stop
occasionally to look back, making sure that the blind friend isn’t too far
behind to hear the bell.

Like the owners of these two
horses, God does not throw us away just because we are not perfect. Or because
we have problems or challenges. He watches over us and even brings others
into our lives to help us when we are in need. Sometimes we are the blind
horse, being guided by the little ringing bell of those who God places in our
lives.

And at other times we are the
guide horse, helping others to find their way. Good friends are like
that. You may not always see them, but you know they are always there.

Please listen for my bell, and
I will listen for yours”.

The bell

My cousin Debra, visiting me during a chemo infusion

The main hall at CTCA called the Gallery

My chemo infusion suite!

Infusion lobby

Driving up to CTCA's front entrance

Main entrance at CTCA (entrance to kitchen-left, entrance to dining room-right)

Guest Services desk (left)

Nurse friends from Pulmomology

My care manager (left) and my oncologist (right)

My nutritionist

My personal scheduler for all appointments! She is a bright ray of sunshine!

My tech (left) and nurse (right) for chemo infusion. You may notice Joey, the tech, from the CTCA commercials.

Kathy delivers meals to the patients if they aren't able to get to the cafeteria due to their infusions. My infusions lasted approximately six hours!

My tall friend, Jeannie. She treats me like a queen. I always look for her smiling face when I'm at CTCA.